Mysterious Medical Malady

July 8, 2017 1:04 AM

My unique symptoms began in February of this year. Since then, they have intensified in nature. As of today, I have visited seven (7!) different doctors - no one has a clue what is going on. I'm hoping that AskMeFi can help.

Thank you, in advance, for reading this question. I am including as many details as I can - my symptoms have baffled doctors and there is no relief in sight. I've been feeling ill since February and am at my wit's end both physically and emotionally.

A brief history:
-In February of this year I began to experience extreme nausea when I woke up in the mornings. This manifested into vomiting on my way to work (needing to pull my vehicle over to the side of the road, etc.). I also left work several times after becoming ill/vomiting once I'd arrived.
-I initially attributed the nausea to either a) being pregnant (I've taken two tests - I'm not) or b) a change in my diet. At the time, I'd cut out dairy products, sugar, and processed ingredients. Since this started, I have made a number of dietary changes - nothing seems to make my symptoms better or worse.
-After an initial visit/physical with my OBGYN, I made an appointment with a GP. He ordered a full series of blood work and gave me a referral to an ENT (ear/nose/throat) physician.
-All of the blood work came back normal.
-At this point we are into April. I began vomiting/choking/gagging for approximately 10 minutes every single morning (getting rid of everything I swallowed during the night while sleeping). I also began getting ill in the evenings before bed as well. This morning/evening routine has not subsided as the months have gone on. Additionally, I started "water brashing." From the moment I wake up my mouth begins to fill with liquid (some type of salvia or stomach acid). I cannot swallow the liquid without immediately vomiting. I have had this liquid filling my mouth for the past three months. I am spitting constantly, all day, every day. I have spent hundreds of dollars on Kleenex and carry little plastic garbage bags with me everywhere. Everyone I work with thinks that I have a never-ending cold (I hide the spitting/water brashing by appearing to lightly blow my nose).
-Back to the ENT doctor. He met with me for approximately five minutes in mid-April. He immediately stated that I was in the wrong place and that I should see a gastroenterologist.
-At the recommendation of a clinic secretary, I obtained a new GP - one who could easily give me referrals to other specialists. I met with my new GP and she referred me to a gastroenterologist.
-Throughout the months of May, my gastroenterologist sent me for a series of tests with other doctors: a stomach emptying test (I got to eat florescent oatmeal which was pretty awesome) to gauge if I am digesting food normally, and a swallowing study to determine if I am choking/having difficulty when I swallow my food. Both studies yielded normal results.
-In June, the gastroenterologist did an upper endoscopy - basically sending a camera down through my esophagus and stomach. He could find nothing out of the ordinary.
-My husband recently made the connection that my symptoms began around the same time that my crown broke on my molar. I received a new crown at the end of March - right before the water brashing began. I contacted my dentist and was referred to a dental specialist; I met with him today. He took several x-rays and did a cursory examination of my teeth. He told me that I have excellent teeth and that my entire mouth looks healthy. There is no evidence of acid reflux (something that has been verified by other doctors as well). The liquid is in my mouth is not doing any damage to my enamel.
-Over the past several months I have taken a number of prescription medications related to acid reflux; there have been no changes in my symptoms.

My questions:
1. What am I missing? At this point, I'm not entirely sure what my next step should be. Every doctor that I visit tells me that I'm healthy - this would be a wonderful thing to hear, except for the fact that I feel horrible and am exhausted.

2. Is there a non-medical route I could/should take? I met with a nutritionist and tried several diets changes over the past several months - nothing seems to help.

3. How should I go about dealing with the emotional side of this? I'm beginning to lose hope and feel like things will always be this way, that I will always feel sick. I feel as though I've tried everything - even though I know that there are still other avenues to explore. My personal and professional lives have been impacted in a very real way. My husband is a great support and encourages me to vent/cry/rest/etc. when I need to . . . I just want to be well.

Thanks very much for your insight.

posted by anonymous to Health & Fitness (20 answers total)

Scopolamine or other anti-cholinergic?
posted by praemunire at 1:18 AM on July 8, 2017

This sounds so terrible; if it were me I would move heaven and earth to find a doctor who recognizes that this is a horrible situation, and takes it seriously. Tests results may say you're normal, but what you describe is NOT normal, you aren't healthy, you are throwing up all the time, and your mouth is filling with liquid. I realize that you may not feel up to this kind of search; perhaps your husband or a friend could start contacting doctors, describing your situation, and emphasizing you need a doctor who will work with you to find out what in the world is wrong. If you have a university hospital nearby, that would might be a good place to start. But you need a professional who will take this very seriously. As a last resort, perhaps a pain clinic? Most big hospitals have them, and they tend to take a more holistic approach to physical problems manifesting themselves in unusual ways.

In the meantime, I would suggest trying alternative therapies. Specifically, acupuncture has helped my husband and me deal with physical symptoms that were untouched by allopathic medicine. There are other modalities, too, such as hypnosis, that might alleviate some of the symptoms. But you have something going wrong, and you need help finding out what. Or at the very least, finding out how to relieve these symptoms.

Finally, I'm hesitant to suggest this, because I have no idea what your situation is, so I apologize in advance if you find this objectionable, but if you have any spiritual practice, you might ask others to pray for you. Specifically, you can send an email to http://www.unity.org/prayer. It's free, it's anonymous, just tell them what you would like them to pray for, and they do. I don't actually believe in it, except that three times a situation has been so dire (family members attempting suicide, cancer) that I was desperate for anything. Each time the people being prayed for, who did not know I was doing it, reported a specific and immediate change for the better. So I offer it to you, for what it's worth to you.

I wish you the very best.
posted by kestralwing at 2:59 AM on July 8, 2017 [4 favorites]

The first thing that popped into my head is that the new crown is made of something you're allergic to -- can you contact the original dentist and find out what, exactly, the crown is composed of? I'd do that, then find a new dentist, explain what's been going on, and ask if he could replace the crown using something else.

Good luck to you! This sounds truly awful and I hope you find relief soon.
posted by LuckySeven~ at 3:16 AM on July 8, 2017 [13 favorites]

This sounds incredibly difficult, I'm so sorry you haven't found help after seeing 7 doctors - and no, you can't be "healthy" regardless of the fact that the tests they've done so far have been clear! Jesus! Nth getting support in the search for doctors who are more compassionate and curious...

I just read that there's a thing called cyclic vomiting syndrome, but apparently, people with that usually get some kind of reprieve after a few days or weeks... (what's interesting is that the CNS might be involved, and there's quite an involved treatment with different drugs [and different kinds of drugs] for different phases). That'd be complex, and there are some scary alternative possibilities... if it's at all possible, seems like a trip to the Mayo clinic would be worth it. Best of luck.
posted by cotton dress sock at 3:29 AM on July 8, 2017 [1 favorite]

Strongly seconding what LuckySeven~ wrote above, as an allergic reaction to the crown material was also the very first thing that came to my mind after reading the time-line of events. It definitely sounds as though your body is "rejecting" the crown, if you will. The symptoms began pretty immediately after the procedure, so that is what I would zero in on, as opposed to consulting additional medical professionals. Following up with your dentist, or other dental specialist, will bring you answers and relief.

Hope you are back to full health soon!
posted by Amor Bellator at 4:03 AM on July 8, 2017

I agree - can you get the crown replaced with an "all porcelain" one? It looks like some that are supposed to be porcelain have a metal interior. Getting 100% porcelain would be a way to see if there was some sort of metal allergy.

You may need to be pushy about this - I've found that when it comes to unusual symptoms, doctors can get dismissive. Good luck!
posted by Toddles at 4:11 AM on July 8, 2017 [3 favorites]

I am so sorry you're going through this.

IANAD: If they're not finding a physical cause, maybe you need a neurologist, because the brain can trigger any system. (Source: my sister's brain tumor caused daily nausea ... Mayo Clinic in Jacksonville helped her for years.) If this is the case, acting quickly makes a significant difference in outcomes.

Now to address #3: the emotional side. (Waving to you in fellowship from the Land of Difficult Diagnoses). My illness is not remotely the same as yours, but the frustration of the difficult diagnosis is so similar.

It took over two years of testing, questioning, medications that made things worse, outright WRONG diagnosis (stemming from the all-too-common "you're a woman so it must be in your head" mentality from a medical practitioner) before I received what we believe to be my correct diagnosis of a chronic illness.

I remember very clearly lying in my bed, feeling as though I was wrapped in a blanket of hot needles, skin so sensitive that my hair touching it hurt. And other manifestations (including near-daily puking; you're right, it's uniquely debilitating). I was just ready for it to be over. It's hard to suffer so intensely for so long, and the exhaustion makes everything worse. But I came here to say HOLD ON. It's so much better on the other side. Getting an accurate diagnosis, just knowing what's going on, made all the difference. Because then I could begin to deal with it. The helplessness abated. And even though I'm still sick, (SLE) I can manage my illness such that symptoms are bearable, and my life is full and rewarding despite it.

You are in the hardest part right now, the never-never land of not knowing what's going on. No matter what your diagnosis, it's easier to cope on the other side.

Can you find a therapist to talk to? It's challenging, I know, because the LAST thing you want is one more medical professional who can't fix what's ailing you. But you need some coping strategies, and someone to vent to without the emotional caregiving you're engaged in with your husband and family. (With this caveat: be careful about accepting a prescription for anti-depressants without having a diagnosis in hand for your primary issue.) Online support groups can help, too, but it can be easy to have your feelings of frustration and defeat reinforced, so be very careful to check in with yourself to see if it's helping or hindering you.

Talk to your primary again. If not the neurologist, SOMEONE will be able to figure out what's going on with you. Maybe you need a second opinion from one of the specialist types you've already seen. Maybe it's a specialist you haven't considered. (My own diagnosis came after I saw a podiatrist. I thought I'd broken my foot, in a way not related to my illness. He suggested I see a rheumatologist. None of my other docs had suggested this, and I'd never even heard of this specialist at the time. The rheumatologist gave me the tests that finally found out What Was Wrong.)

Finally, in case it helps, here are a few of my "I have to make it through this day" strategies from back in the day. These helped me personally. YMMV.

GETTING THROUGH THE NEXT FIVE MINUTES:
1) 4-4-4 breathing to interrupt the autonomous nervous system and derail incipient panic/pain/stress cycles. If you can manage it, when you start to feel overwhelmed (NOT to combat vomiting! Don't choke yourself ) breathe in for a count of four, hold for a count of four, release for a count of four. Repeat until the edge is off, or you fall asleep.

2) This Too Shall Pass. In the midst if an intense episode, I reminded myself that I'd been through something similar yesterday or the day before, and the intensity didn't go on forever, and it's likely that this one will pass soon too.

GETTING THROUGH TODAY:
3) Think about something else for a while. Put your whole focus elsewhere. For me, this was video games in the harder times, a new art skill in the not-as-bad times. Studies are now showing that veterans with chronic pain require less medication when they've been playing video games, and my personal experience backs this up. Your health problems are overpowering. Self-medicating by giving yourself something else to think about is OKAY.

4) illness doesn't get to have complete ownership of your life. For me, this took the form of a gratitude journal, in which I wrote three positive things every day. Not gonna lie: some days all I could come up with was "air" and "clean water" and "I have not yet run amok with a meat cleaver" and such. But the act if writing it down was good behavioral therapy for me. And over time, they added up to a list of positive things and happy memories that I could look through when I was in a dark space, to give myself a boost, and prove to myself that my life was more than my illness.

GETTING THROUGH THE NEXT WEEK
5) Plan an outing that's not a medical appointment. Even if it's as simple as going to a park and looking at a fountain or pond or something. It helped me to remember that there was more out there.

6) If possible, get a cleaning service for the day or enlist friends and loved ones to give your place a good going-over. When there's this much going on, household chores and maintenance have been slipping, and this creeping dishevelment can contribute to your feelings of ill-being. It's difficult to admit we need help, but a freshened space can make a difference in our coping reserves, and it's vastly useful to not have this be one more thing for the sick person to have to do.

7) You may already be doing this, but keep a detailed log of your medical appointments, including what the doctor said, test results, etc. They do start to run together. I put mine in a clipboard with storage inside, so I could easily make notes on the top, but a three-ring binder would do as well. Take this to appointments with you.

Again, I am so sorry that you are going through this. I am sending you strength and support. You can me-mail me if you need to talk. I've got a dozen years experience now living with chronic illness, and if you need to vent or commiserate I will listen.
posted by Nancy_LockIsLit_Palmer at 4:22 AM on July 8, 2017 [22 favorites]

IAMNAD, but I have a strong hunch it isn't the crown causing all this. This really sounds more gastrointestinal. Has anybody talked about a colonoscopy? Have they talked about barium enemas, or ultrasounds? There could be a problem lurking deep down low, beyond where an upper endoscopy can see. I think you need the whole works looked at, stem to stern.

FWIW, I was miserably sick with gut stuff when I was 21. Endless nausea, cramps, all sorts of horror for months and months. I saw all kinds of doctors and was diagnosed with mono and irritable bowel and other illnesses, but they were never 100% sure what was going on. I started to think it would never get better, but eventually it did. So, even if you never find a doctor who figures this out, it's not impossible it will just go away.

I really hope you feel much better soon.
posted by Ursula Hitler at 4:32 AM on July 8, 2017 [2 favorites]

Gallbladder? I had a bunch of these symptoms and most went away after I got my gallbladder removed.
posted by Jacqueline at 4:52 AM on July 8, 2017 [2 favorites]

Have you spent any nights away from home during this time? If you haven't, you might try doing so to see if your symptoms are somehow tied to your environment. Did you or your husband change some basic product around the time this started? Personal products like soap, shampoo, etc., or household cleaning products?

I hope you feel better soon.
posted by mareli at 5:11 AM on July 8, 2017 [1 favorite]

I did this for months before it started being accompanied by severe abdominal pain and it was a big kidney stone.
posted by Mr. Yuck at 5:14 AM on July 8, 2017 [4 favorites]

I would get a second opinion from a different gastroenterologist. Emphasize at your appointment that your quality of life is being affected by your symptoms.
posted by Mouse Army at 6:33 AM on July 8, 2017

I don't know where you are located or what your insurance situation is, but there are clinics that specialize in difficult diagnoses. Mayo Clinic, mentioned above, is kind of famous for this. When I googled "difficult diagnosis clinic", I immediately pulled up the Stanford Center for Undiagnosed Diseases and Emory Special Diagnostic Services. The fact that they can find nothing wrong so far does not mean you are healthy - but you're going to have to advocate for yourself.

Last fall, I was absolutely positive I was misdiagnosed at a highly regarded university clinic (at a hospital that regularly makes national top-ten lists). I spent $500 out of pocket to see a cardiologist I'd heard on a podcast. The details aren't pertinent to your situation, but after running blood tests, he sent me to the ER for transfusions - seeking out a second opinion literally saved my life. That was the best $500 I ever spent. But even as I was driving to his clinic, I kept thinking I was overreacting. I wasn't. Listen to your intuition. Something is wrong.
posted by FencingGal at 6:43 AM on July 8, 2017 [7 favorites]

I would ask the dentist to pull the crown and put on a temporary crown, if possible, on the chance that something in it is causing this. Check what type of cement they use, or any other products. I just had the base for an implant put in. The endodontist took an xray that showed the nerves in my roots. Maybe the crown is affecting a nerve?

The act of swallowing suppresses the puke muscles, so try keeping a squirt bottle of water or ginger ale/tea handy. Ginger is a natural anti-emetic, also tastes nice and makes your mouth feel fresher.

Sea bands are bracelets that are said to reduce nausea using accupressure points, might be something to try.

I think botox is used to control sweating in some cases; could it be used to get your salivary glands to reduce output?

Hypnosis is a very useful and well-documented tool to help you control some physical symptoms. There's a good chance it would help reduce your symptoms. (Note: this is not to say this is psychosomatic; hypnosis is useful for physical symptoms.)

*Something* is clearly going on, but I suspect each doc has looked at 'their' component, done tests, no results, throws hands up. At one point I had a severe presentation of a relatively rare condition. Lots of tests and Weird, but you don't have one of *our* diseases, throws hands up. Great, I don't have one of 2 dozen really bad things, but ... My doctor sent me to a hotshot specialist in a bigger city. One person in the office remembered research based on one similar case. Got treated, condition was significantly reduced. So, be persistent that you have a physical problem that is severely affecting your ability to work and live, and you need to have it addressed. Good luck.
posted by theora55 at 8:11 AM on July 8, 2017

An oral infection would cause all of this. I think replacing the crown is a prudent idea too. And definitely seeing a neurologist.
posted by fshgrl at 10:39 AM on July 8, 2017

How has toothbrushing been going for you? I struggle with sinus congestion and often end up having difficulty breathing while brushing teeth and if I accidently swallow even the tiniest taste of toothpaste it's the water brashing and vomitsville for a good part of the morning.

Taking claritin, an asthma medication (prescribed by an ENT for the sinus congestion) and waiting until I've been upright longer in the day before brushing has helped.
posted by TwoStride at 11:06 AM on July 8, 2017 [1 favorite]

IANAD but I have a nickel allergy and had symptoms exactly like yours after accidentally ingesting nickel (long story that I promise is not as ridiculous as it sounds). The nausea, the vomiting, even the water brashing. Most people associate nickel allergies with reactions on the skin (rashes, swelling, etc) since nickel-containing jewelry is the most common way that people come in contact with nickel, but if you're allergic to nickel and ingest it or have something in your mouth that contains nickel, allergic symptoms are definitely still a thing.

Since I prefer to link to peer-reviewed scientific literature (although if you Google "dental crown nickel allergy" you'll find plenty of results to empirically support this isn't an uncommon complaint), here is a 2013 paper from the journal of Clinical, Cosmetic and Investigative Dentistry describing allergic reactions to dental implants. See the following quotation:

The results of their study showed that titanium alloys contained very small amounts of additional elements such as beryllium, cobalt, chromium, copper, iron, nickel, and palladium. Forte et al[29] showed that these elements may be causative factors for different allergic reactions in patients with dental implants. In a similar report, Schuh et al[47] showed that even a small amount of nickel in titanium alloys may provoke or intensify allergic reactions.

So, if you don't currently know if you have a nickel allergy and your crown is not porcelain-only, it sounds like you may want to put "ruling out a nickel allergy" at the top of your what-to-look-into-next list. I'm not saying this is definitely the cause of your symptoms - again, I'm not a doctor. But if you want to take an Occam's razor problem-solving approach, an allergic reaction to a dental crown's metal content sounds like it may be the hypothesis with the fewest assumptions.

Trust your body and what you feel. If these symptoms started at the time your crown broke, and you didn't have the broken crown replaced until the following month, that's a significant period of time for the nickel to get into your system. Even if your replacement crown is porcelain (and even if the only reason you reacted to the nickel, assuming you did, was because the crown broke), it's possible for the symptoms to still persist this long. I once took a medication that caused me a severe allergic reaction that didn't start until I'd been on the medication for over a year, and once I stopped taking the medication it was another six months before my symptoms stopped. (I tried taking the medication again after the symptoms finally went away. Within 3 hours, the symptoms started again in full force. It was definitely the medicine that caused it). So it's also possible that you're still reacting to the contact your body made with the nickel in the broken crown, and these symptoms may go away on their own but not for several more weeks or months. That would be one reason to first see a physician who can test you for a nickel allergy, before going to the trouble of having the entire crown replaced.

This sounds so horrible and I am so sorry you're going through this. Wishing you luck and hoping this is resolved very soon.
posted by nightrecordings at 11:21 AM on July 8, 2017 [11 favorites]

There are excellent avenues to pursue in the previous answers, I'm just throwing this in, too: inner ear infection.
posted by Iris Gambol at 9:07 PM on July 8, 2017

Random thought, you could have someone observe you through the night to see if there is any hint there.
posted by madmethods at 9:29 PM on July 8, 2017

I just read about a tick bite that causes allergies to meat... Are you eating meat every morning/every meal before this happens? I have no idea, but something to read about. Good luck.
posted by mirabelle at 7:43 AM on July 9, 2017